a belated happy MLK day

this is belated because it's been sitting with me for a while- partially written- partially talked about- partially processed.  it's been with me because race is complicated, history is complex, and stigma is real.  because things that happened generations ago- still color our lives.  because while it seems so utterly absurd that skin tone should affect anything- it has, and it still does.  we've come so far, but we have farther to go.  and i've realized that it's never going to reach a fully processed place for me- because it's a dynamic issue- it's in motion- evolution.

martin luther king, jr. day is a day that moves me.  and living in atlanta- makes it even more moving- more real, more intense. we live about 5 minutes from Dr. Kings birthplace, and his center.  we are in the land where slavery was real- where great-grandparents were not free- and where the fallout of this is still visible.  where half the population's identity is cloaked in this history of devalue and indignity- turning from a sense of unwarranted shame.

this year, i had all the kids home- mike was doing a project with our church fixing elderly housing.  i was trying hard to be in my life.  i was wishing i could be in someone else's or at least, building someone else's house.  i was tired of being cooped up with my kids.  tired of saying no. tired of too much media and not enough learning.  zoe's homeschooling had become un-schooling all week with the boys home.  so i decided to get it together and do some organized teaching.  i sat them all down and decided to talk to them about martin luther king jr- about civil rights- about injustice and about freedom.  then i read them the 'i have a dream' speech- and i cried- through the whole thing.

zoe asked if i was happy crying or sad crying.  and i didn't know how to answer.  it's complicated isn't it.  it's both- grieving and rejoicing. it's the shame of our history and the pride in this man and what he helped our country do.  i cried because mr. j, painting our kitchen, in the next room, was a black child in the south when martin luther king was giving speeches and challenging a nation; and now the first president my children will know is Obama.  that while it's hard to wrap our minds around separate bus seating and store entrances- it's undeniable that the police were called by our neighbors twice the day before to check out mr. j- largely because of his black skin.  i cried because i didn't want to tell them about it- i didn't want to poison their minds with any idea that skin color mattered once. that unfortunately- if often still does.  and i wanted to tell them the story of victory and change- that it's still in process and to be mindful and attentive- that color doesn't matter, but history does.  and we need to think on these things.

my friend kim (amazing person and doctor blogger-see gradydoctor.blogspot.com) talks often about the older african american generation at Grady Hospital, and how they look at her- a beautiful, successful, doctor- with such connection and pride- in a knowing way- they are thankful for her accomplishments- they respect her for her achievement- it's covered up and down in feel good.  i love Grady. i especially love that older generation of wise folks, those 'grady babies' who've seen it all- really-they have such dignity and character- but they don't look at me that way in the elevator.  there is a disconnect. and it's almost in reverse.  i want to say 'thank you' to them- for living through hard hard times in the south- and still smiling at me as we ride up together to clinic.  i want to make sure they feel respected and first and valued. i feel a sense of shame- for what my skin color could represent.


today i began planning my barbara inspired field trip approach to zoe's education.  i went to the MLK website to read about the King Center, visiting hours, tours etc. and was again so moved by this man and his words.  this quote from his speech 'the drum major instinct' plays when you enter the site:


If you want to be important—wonderful.
If you want to be recognized—wonderful.
If you want to be great—wonderful.
But recognize that he who is greatest among you shall be your servant.
That's a new definition of greatness.
And this morning, the thing that I like about it: by giving that definition of greatness, it means that everybody can be great,  because everybody can serve.

You don't have to have a college degree to serve.
You don't have to make your subject and your verb agree to serve.
You don't have to know about Plato and Aristotle to serve.
You don't have to know Einstein's theory of relativity to serve.
You don't have to know the second theory of thermodynamics in physics to serve.
You only need a heart full of grace, a soul generated by love.  And you can be that servant.


grace and love and servanthood are enough.  they are the tools that will bring the continued change.  that will help to overcome histories of oppression and injustice. these are what we need to teach- to remember- boiled down, it's not so complicated and it gives me hope in all the areas of my life.  we are all born with the ability to make a difference- big or small- learning disabled or not- black or white.

the next MLK day we celebrate will be in africa.  we will stand out, we will be the minority.  my kids will wrestle with their identity- their skin color- probably wishing it were darker- so they'd fit in- belong.  and we will continue to teach them their value and the value of everyone - whatever their size, or shape, or color or nationality.  but most of all, we'll strive to grow their hearts full of grace, and love.  and to practice servanthood.

the park and the red sea

it's 70 degrees outside.  sunny.  GORGEOUS.  this is when the south rocks.  you can get a weekend like this in january.  i feel a little bad for the sleeping plants and trees who are being woken up too early- but for the rest of us- it's a beautiful thing!

the park playground is a great place.  it's kind of like a neighborhood for people who don't have neighborhood kids to play with.  its' a different culture than school.  kids are thrown together- different ages and different streets or sections of town- different schools- different challenges and strengths.  and at the playground, labels that might follow you during the school week, are gone. you are not 'the quiet kid', or the kindergartner, or the kid whose in special education.  you're the kid who likes the play star wars- or who has a dog to be petted. i love this experiment in social interaction.  i love watching my kids find there way in it- and just being the backdrop- the haven- and then finding some adults to talk with.

zoe is honestly a playground pro.  she can work the scene like no one else.  she is bold in her introduction- she is fearless and determined. she doesn't need me at all.  she can let rejection roll off her back and move on.  and that's what's great about the park- there is always another kid.

today we went because we had to be outside- for every minute the sun was shining- because it would be a crime to not be outside in this luxury.  we packed a picnic lunch and went for 2 hours.  i even brought the dog- which i never do. everyone was thrilled.  this particular park is perfect for kids my kids ages.  there are swings, a lot of playground equipment, and woods and hills and a stream- something for everyone.  we ate first and then they were off.  zoe ended up playing with a bunch of 7-9 year old girls for hours.  there was no drama.  no sadness.  no stickiness.  even around the monkey bars.  jude and bryn found a 10 year old boy who liked star wars and seemed to me to be a bit on the 'special' side, and they played with him for hours.  it was all the beauty of public shared space, of organic community.

when we left- everyone was in a better mood.  they had run out their energy on the hills and fought battles that needed to be fought with sticks.  they had found their conversations and shared their stories and been who they needed to be for the afternoon.  they'd made new friends- friends they planned to meet up with again. it's the beauty of life in all it's childhood purity.

for me- it's a lesson in letting go. see, i still have the mild urge to check in - to 'save' zoe- to hover-to intervene- to help navigate, but i don't.  i practice resistance.  i let her sink or swim. i remind myself that she is her own, that she must do this with out me. that if she gets horribly upset and melts down and does the wiggly voice and covers her ears and screams and goes running away down the street- that it's OK.  that it will be OK and that i'll be OK.  but that doesn't happen on the playground- only in my mind each time we're there. no.  she amazes me- and each time, i'm a little more comfortable, a little less on edge, a little better at letting go.

for me-it's about allowing the process to run.  it's about being alright with 'different'- it's about accepting my identity for what it is.  a mom of a non-typical, playground pro, lovely, engaging, delightfully different kid.  so i think i learn more at the playground then they do.

today in church the sermon was on the crossing of the red sea.  the israelites had just left the egyptians- just left a life of slavery and had followed moses, led by God, into the dessert.  and now they were trapped between the encroaching egyptian army and this giant body of water and they were really mad.  the situation stunk and they were mad at moses and at God and actually wished they'd just stayed in egypt as slaves.  they did what i do all the time.  felt the fear and got mad.  lacked the faith and wanted to run back to slavery.  because known pain is often better than the scariness of the unknown.  and God tells moses to tell them to be still.

there it is again.  stillness.

but once they are still.  quiet.  not freaking out.  he tells them to move.

he opens up the sea- he allows passage to safety.  he leads them closer- to the promised land.

lessons in faith. lessons in patience.  lessons in stillness.  lessons in obedience.

the result is provision.  non abandonment.  safety.  growth.  lessons learned.  awe.

for me- i'm always trying to run back to the painful but known.  i'm always finding a giant sea in front of me to throw me into doubt and fear. i'm always struggling with trusting.  i'm often feeling trapped and forget whose leading me.

so i love these days of remembering- these days of seeing the fruition.  of seeing the promise.
these days when stillness happens- and crossing is possible- and there is a moment of awe- and i feel the grace.

listening to our words

yesterday at work,  i got to see one of my favorite guys- (kevin it was mr. w). he has spent most of his life living in the fringe- on the edges- homeless for years- a drinker- a smoker and other things too.  he's a guy who wasn't surprised when he got lung cancer- well, until he actually got it and found out it was incurable.  the lung cancer wasn't the shock- the incurable was.  there is something about endings.  he had lived hard- and this diagnosis was a turning point- a chance for reconciliation- for redemption- and that part he has embraced wholeheartedly.  i've watched him go through this process - i've seen his regrets and his acceptance and his outreach to family - his making lemonade with his lemons.  he has a beautiful soul- and i'm reminded that most people do, underneath it all.

he was really late for his appointment - which always makes me nervous- but i found him downstairs finishing his oncology appointment.  i was getting directed to his exam room by one of the oncologists- who said to me,
"oh mr. w is doing great!".
"really?" i said, knowing he is losing weight, that he has a growing mass in his abdomen that terrifies him, and that he is on a third line chemotherapy and his disease is continuing to progress,
"what do you mean?"

"well, his pain is controlled and he is able to a lot of things for himself."
this is true.  but he is also dying.  he has a few months left to live. 

what do our words mean?  and what is the relationship between the words themselves and who is speaking them?  because if mr. w's friend said that to him, it would mean something different than if his cancer doctor says that to him.  we assume that context is relevant. and it should be.

i've spent many hours with mr. w- i've been to his home.  he has really struggled with wrapping his mind around facing the end of his life.  he's only 53.  

we need to be careful with our words- in both directions.  we need to tread lightly.  to listen before we speak.  to know the heaviness and not just pour syrup on it.  to know the heaviness and help make it lighter with honesty and hope.  to face the music.

the man right before mr. w- is another tough one. diagnosed only a few months ago with bad disease- no time to process.  he came into clinic sick- kidneys failing- in pain- not functioning- and looking bad- bad like i wouldn't be surprised if he died during this hospitalization.  we had only seen him in clinic once before and we hadn't had 'the talk'.  we hadn't talked about what he would want in the end- how he sees the last chapter.  and it was clear that he didn't believe his book had an end.  i sat with him and held his hand and said i needed to know who he would want to make decisions for him, if he couldn't make decisions for himself.  he told me he wasn't going anywhere- he told me he wasn't going to die.  i told him that we were going to do everything we could to help him feel better and get better.  but i told him we are all going to die.

i've seen what happens when you don't talk about it.  the default.  one of the first times i really knew that i was going to struggle with certain aspects of medicine was during my ER rotation as a senior resident.  i was in "zone one" the high acuity area and we'd just received a call that an old man was coming in in v-fib arrest.  this is bad.  the ER attending physician was all pumped up.

"this is great! you'll get to run the code."

did he just say 'this is great?'  all i could thing was how awful it was.  that his poor old man was dying- and that he was going to die on a cold table in an overly bright emergency room, surrounded by strangers who will descend upon him in full protocol mentality, without knowing what he wants or who he is.  and that if  he survived- he will not have much left upstairs- and he'd be stuck in some new reality- the in between zone- not really dead, but not really alive.  i felt sick.  he rolled in- and we heard the report from the EMTs.  man found down- resuscitated in the field- had a pulse-but lost it- some electrical readings on the monitor of his heartbeat.  he was in trauma room 2  - his "name" was trauma elk.  that means that no one knew his name and he'd been letter E on the shift (the 5th pt) with no name.  i began the algorithm for a PEA arrest - pulseless electrical activity.  it wasn't cool, it wasn't exciting, it wasn't good practice. it was someones dad.  since i was running it- i asked how long it had been since he'd been down- at least 20 minutes.  enough. i said.  i'm calling it.  time of death- 2:15 pm.  i still didn't know his name.  i found his wallet in his pocket and it had a number in it.  i went out to the nurses station to call it.  it was  an answering machine, " hi you've reached earl, i'm sorry i can't take your call- please leave a message after the tone."  it was weird to hear a healthy sounding voice coming from a dead man.  i felt like i'd done him a disservice.  i saved his  'trauma elk' sticker, and when i came home, i put it on a small canvas and painted it orange (above).  i wanted to do something to honor him.  and to remind me of the life behind each person- of respecting each individual in both life and in death.  and to remember the that the words we speak matter- to remember this when i'm the attending physician- when i'm the teacher.

our words reach out to each other everyday.  what we say matters- not just as doctors- but as people.  friends, parents, spouses. neighbors. we can hang on to words forever- they live with us- bring us joy and sadness- and who speaks them matters.  the word is linked to the mouth, mind and heart who spoke it.  powerful.

so i'm reminded to be careful- to tread lightly- to be gentle- and to pay attention to which hat i'm wearing-and to who is listening. that words can be magical or harmful and they stay with us-playing over and over- shaping our days.

raking for stillness

the house is officially on the market.  and mike is now on his way to africa.  and today i became the home-steading prairie wife.

we stayed up late last night, and mike got most of the tasks done- but there were a few remaining- that would generally fall to him.  yard work.  new mailbox installation. and monkey bar removal- well, finishing it, and screen repair.  since the 'for sale' sign hangs in the front- i decided the front yard should be my priority. so i spent 2 hours raking, pine-strawing, sweeping, bagging leaves and planting some flowers.  and so i had 2 hours to think- to be- and that was wonderful- and in it, i found stillness.  i found lots of other things too.

i found that being outside and smelling the air and the leaves and the dirt takes me back in time.  that getting that dirt underneath my fingernails and on my palms reminded me of playing and of things being less serious.  i found the beginning of crocuses - that i wouldn't have noticed for several days if i wasn't laying pine straw, and i found a dead fallen branch with a fungus that looked like raisins. and my imagination started to move- i began to ask questions.  i began to think about how far away we've moved from the land, too far,  and away from the work it takes to keep the land.  and i began to think about people in the neighborhood taking care of their land together- of growing things or even just raking- and the community and conversations  that can come from that.  we've all gotten too specialized.  too busy.  we out-source everything.  and we're left with clean hands and neat yards- but we miss the engagement with the leaves and grass and what they have to teach us.  they remind us of time.  that things die and grow.  that some things live off other things. that the earth can just do fine with out us- that wild will return to wild.  fallen leaves will eventually turn to dirt.

i felt real.  i could see my accomplishment- slightly painful but relatively quick gratification.  and i realized what we're missing by not having those 2 hours.  we're missing process time.  like what night does but for the awake mind.  time to be busy- to wear out the body- and in it, to quiet the mind.  peace follows.  and an appetite for meat. and a readiness for a good night sleep.

i began to think about the medical plights of most patients in the US who go to see their primary care physician.  depression, obesity, insomnia, the fall out from obesity- diabetes, high blood pressure, knee pain and back pain, more depression.  i began to think about the circles these aliments chase each other in.  and i thought about my dirty hands and my blisters and my peace.

what if we all were prescribed 30 minutes of raking daily, and a good meal with a lot of water.  i think we'd start to sleep better- feel happier- be less bored- be more creative- be less sad- lose weight- eventually have less joint pain.  then i took it one step further.  what if we all started to think and talk about what we're thankful for.  what if we all started to apologize to one person each day- just to be mindful of our own self centeredness.  even if it's just the person who we didn't let turn in front of us while driving- or the telemarketer who we were rude to- or the child we snapped at- or the husband we weren't forgiving of coming home an hour late.

i think the world would be kinder.  more joyful.  this came from 2 hours with a rake- a lot of leaves and some sweat. and this worn old lady is going to bed.

goodnight

it's almost midnight.  these days we stay up late.  tonight i don't even want to go to bed- because i want to avoid tomorrow, because tomorrow mike leaves in the morning.
i'm listening to music.  i'm so thankful for the poetry of it and the sounds and soul of it.  it makes me so happy and gets me so excited about life and what life brings.

i'm beginning to get ready for africa- in my heart.

i still get excited about all the different moments in the day.  the minutes in the bed when the world is still and i hear the feet of two boys running up the stairs- each day - like it's christmas- like i'm a present- that joy is unreal, but so real.  and then that cup of coffee, the smell and routine of it. the picking up moments after school- hearing about the day, the little dramas, identifying the creatures in their drawings.  and i love the evening when mike comes home- like christmas for me.  and dinner, sometimes a glass of wine, and then the time after they go to bed- when i remember the other parts of me- of us- of life before we had 3 lives join ours. and i wish there were even more hours in the day and in the night- but then i realize there is thankfully, another day.  tomorrow.  so it goes around, and life is good that way.  and when it's bad- and you are glad to go to bed- there is still tomorrow - for a new chance to begin again.

so good night. sleep well.

whole

it's freezing outside- ok, well for atlanta.  i'm sitting beside my african bracelets dreaming of warmer weather. mike leaves tomorrow for uganda and the house will finally be for sale. but it's been a crazy week trying to get everything done before he goes.  he is amazing- truly.  he can do so many things, and so many things well- that i sort of stand in awe.  he preps well, paints well, does carpentry well, cleans well, and he can even do plumbing. he can move large pieces of furniture by himself- like queen mattresses and desks.  he can clean up a yard in no time, fix broken furniture, and replace ceilings.  he has tools and a good mind and really big hands and patience.  the only thing i have in that group is maybe a good mind. which i discovered today, sometimes isn't enough.

yesterday i decided to do some yard work, just some raking and planting.  oh my word- i haven't raked in years- and it's hard- like work-out level hard (which i also haven't done in years). so i'm raking in my vest in the afternoon feeling like my mom in the '70s- like i'm the person with the push mower- the person using the antiquated method of yard clean up- like i'm old school. it was hard, and i kept thinking of the girl in that book 'the dirty life' and how she's all about being out on the farm doing hard manual labor- and not complaining- so i stuck with it, until the realtor came over and i quickly abandoned my leaf piles.  but i did feel connected to the earth- to my body and the muscles in there and their purpose.  i think if we all raked instead of using leaf blowers we'd all be buff and healthy.  i plan on doing this more often.

today i set out to chop some things off the todo list and was quickly annoyed and then humbled, probably because i insisted on homeschooling while doing the work.  this entailed zoe locating herself where ever the work was.  so first i painted the breakfast area while trying to "teach" zoe multiplication partial products.  that was a challenge- especially because we'd never done partial products before and it requires multiple steps and lining things up correctly.  i really enjoyed the painting part.  the math got done- but not with out our classic conversation- which i'm happy to report wasn't a meltdown- but maybe not just a conversation either.  it was the 'why did you help me' one.  the good news is that the painting distracted me enough to not get really angry with her- and my hands were busy so i couldn't throttle her, so i just painted and she regrouped and we talked about how she wanted to stop being so stubborn and accept help.  which is the first step- acknowledging you have a problem and then wanting to change.  she's moved from pre-contemplation to contemplation- maybe even to preparation. (that's  behavior change language).  and that is great.  it will take practice.

then i painted the big banister post- and i'm thinking "maybe i should do manual labor- it's so satisfying" and i got into this zen-like place of following the lines of the wood and cutting the edges.   next, i went to 'touch up'  zoe's room, but the paint can wouldn't open.  i tried for about 20 minutes.  i pried and pried slowly, around the entire can- chanting 'slow and steady wins the race' -not sure what race i was referring to- but confident that eventually, the can would lose. it didn't. how can i not be strong enough open a paint can?  so irritating!

i gave up, and decided to go down to the back porch and take down the mike-built monkey bars.  i knew this would require an electric drill, which i eventually found, and i went out into the back- feeling really cool- because tools kind of are cool and so are the people who use them- which apparently isn't me.  i unscrewed half of them but the others wouldn't budge.  i felt like such a girl.  stuck.  dependent.  and it made me so annoyed.  i called my brother to make sure i wasn't doing something dumb- like using the wrong drill bit- and told him how i felt.
"but you are a girl!" he said.  "you shouldn't feel badly that you can't do the same things as mike- he's a lot bigger and stronger than you."


but i did feel bad. i want to accomplish whatever i put my mind to.  i want to not be hindered by my limitations. i wonder if that's how zoe feels - hindered by her limitations. so frustrated by her inability to do something that she can see other people do. other people her age- or even younger- like her brothers.  that would do me in.  and maybe after years of this- it would translate into the 'why did you help me?' bit.  the summary of oneself as dependent on so many levels, would force the tangible frustration at getting help with things that you actually can do.  it's like an outlet for years of that 'stuck' feeling.  i guess i should give her a break- and me a break.

in grammar, zoe and i were reviewing homophones: words that sound the same but are spelled differently and can have different meanings. like toe and tow. these are very confusing for zoe.  she can have a hard time telling which one goes where.  she's very literal- and so this is extra tricky.  she'll often ask for clarification.  "you mean which one- but not like a scary witch, right?"

i was thinking about the homophones 'hole' and 'whole' and how weird it is that they sound the same but mean not just something different, but the opposite of each other.  one word implies something missing, or an empty space, the other, completeness. separated by 'w'.  one letter separates void and totality. we think of those ideas as ends of a spectrum- as extremes.  i tend to live in that extreme world- to flock to the ends of things- in an overly dramatic kind of way.  joy, pain. black,white. all, nothing. empty, complete.  mike is better at living in the middle- of holding hands with the holes and the wholeness in his life.  with his big hands and his patience he is able to do so much- slow and steady he goes.  i'm like a wiry firecracker - sitting in the box- then once lit- i can do amazing things in the sky or explode in your face and you'll lose an eye.

but maybe it's easier than i think. maybe it is just one letter- and not a universe between hole and whole. slowly filling in the holes leads to wholeness. but accepting the holes leads to a different kind of wholeness. for zoe, bit by bit accepting some help- overcomes the stubbornness.  for me, accepting the hole-y-ness of my life will get me to 'complete'.  they're not that far off- they are related- by more than their sound.

i went back upstairs to face the paint can while zoe read 'charlie and the chocolate factory' out loud.  i had help- a new idea from my brother on how to open it.  slow and steady- i pried at it again.  my hands aren't that strong, but i used a longer tool- more leverage. a few minutes later the lid yielded.  her light pink walls look beautiful. 

the emperors clothes

zoe is at her brain balance close-out testing session.  mr. j, our pre-paided painter is finishing up his painting and i'm totally exhausted- but in a good way.  i was on call this weekend- it was kind of busy- and returned in the late afternoon to chaos- paint and dust and boxes- as we try to get the house on the market this week. and in a few days mike leaves for a two week trip to uganda.

i've been thinking about identity- what it means, why we value it, why we need it- what parts of it are stable and core to us and what parts change- or join us for  little while and then leave.  i think about this in relation to my kids- who are they? how can i help them in shaping their own uniqueness.  i think about this in relation to myself-(as you all have read)- and the process over the past year of it's morphology- and me trying to remember and hold onto the core parts.  and i have been thinking about it more universally- what happens to our identities as life happens to us?

this weekend i spent a lot of time with a patient who had just been diagnosed with metastatic pancreatic cancer. a healthy, 60 year old woman with clean living.  i mean this lady took care of herself- and everyone else.  she's a vegan, no "bad habits "(which in medicine speak means no alcohol, tobacco or drugs), she goes to work out at the "y" (ymca), she goes to church, she gives to st. judes children's hospital, to the battered woman's shelter, to the american cancer society, she is a care-taker to her friends, her sisters and her sons.  when she came into the hospital last week, it was for a big surgery with a goal of removing her cancerous pancreas with the hope of a cure.  when she awoke in the recovery room, she found out instead, that the cancer had already spread to her liver- and the surgery was aborted.  in a moment her life changed.  not cure- terminal.  not cure- months, maybe a few years to live.

i met her on post op day 9.  she was doing exactly what i would expect- questioning, fearing, accepting, and denying all at once- because it's complicated- because we're complicated.  she was asking the question that everyone asks at some point- why do bad things happen to good people?  how could i have cancer when i take good care of my body?  how could it be terminal when i take good care of other people- when i give of my time and my money?  what did i do to deserve this? why me? why now?

she is a woman of faith- and her faith is strong.  she knows in her mind that life happens- and bad things are part of life.  but there is this 1 foot gap between our heads and our hearts- and there are lifetimes in that space.  the head knows but the heart feels it- and the time travel between these two spaces can be tricky.  i was trying to just listen- and to affirm her questioning- to help her live with the tension of those opposites - the knowing and the emotions of the knowing that loop back to question the knowing.   i was trying to be present in her suffering. to not let her feel abandoned.  to reassure her that yes in fact she didn't do any thing, she is not responsible for this, and its' normal to feel it.

sometimes i think it's almost easier for people who have lived hard- bad habits and all- when they get cancer or end-stage disease, because it's like they were waiting for it to all catch up with them- as if cosmic justice has been dealt.  there is a different level of acceptance- and it can bring with it transformation and redemption.

but ms. f- she wasn't waiting for this- it came out of no where.

when i went in on sunday morning- i went to see her first.  she was in the dark, crying. she's carrying this big burden- her cancer is a secret.  only her sons know, and she didn't tell them, the surgeon did.  she hasn't told her sisters, or her pastor or her close friends- even those who've come to visit.   as she cried- i asked her what worried her most about telling her family her diagnosis- she said, "they will think of me differently- i won't be the same." identity shift.  identity loss.  she fears those moments - those life altering moments- when one minute your someone's mom, someones sister and then next moment your a mom, a sister with terminal cancer.  it changes things.  saying it out loud makes it real.  other people knowing, makes it real.  as we unpeeled it further, we found that she's afraid of the separation that comes, of being alone with it- of people avoiding her- of what will happen when she is not the caretaker- afraid of losing her identity.

i remember finding out my mom had cancer when i was 10.  my dad told us upstairs in the chocolate brown colored guest room with the rainbow carpet- the room that would eventually become my bedroom.  he told my brother and i- while we sat on the floor- knowing that sitting on the floor with my dad was a big deal, but not understanding exactly what this all meant.  i remember going down to the kitchen afterwards and my mom was there- doing dishes or something and i sat on the washing machine banging my heels into it- that loud hollow noise- and i was afraid to touch her.  i was afraid of the shift in her identity.  i felt this enormous and terrifying wall between us- that had never been there before-and i had no idea what to do about it.  then i recall my mom turning around and putting her arms out and me running into them like a magnet.  the walls were gone- she was the same- she smelled the same- her hair was the same- and the connection was back.  but before you talk about it- it is all awkward and strange and isolating.

so are most things that seem unusual or atypical.  having a child with special needs- for example.  a unique identity.  feels isolating- you share sometimes that fear of telling people- will they avoid us- will i be more alone.  what's kind of funny about it all when you step way back and look at it is..... the emperor has no clothes.  we're all dressed up- thinking we look metaphorically great-people are feeding that identity- but underneath all that imagery- we're all naked.  we're the same- we get sick- we struggle- we worry about being alone- we worry about who we are and what we're supposed to do.

but when those hard moments come- when you're wondering who you are and how did you end up here- and that none of this was what you meant to sign up for  - that is when your core shines.  the base of your being is steadfast- you find out what you're made of. for me, i'm mostly made of a small person who leans on a big God- who thankfully can take it.  when the layers have been peeled off- i can see what's propping me up- and i'm so thankful for that. because life will continue to "happen" and i will be many things and lose many things but underneath it- is something never changing.

it ended up

i have to write the conclusion to the day- because it was pretty great.
i have to write about the view from the sky- the important stuff- that happens when not planned- when you're not asking for it, or even looking for it-when you might be feeling withered, because it's God's gift- it's grace.

after singing 'raindrops on roses' a few times- and starting to feel not so bad- i loaded zoe in the car to get her brother and get some things done- boring things- like the oil changed and the car's emissions test-things that are easy to avoid, especially when withered.  but i thought about endurance- and getting on with ones life- and off we went.

58$ and a couple of service station snack items later- we picked up the middle child- and headed off to 'our gym'.  our gym is 'sensations therafun'.  a place started by a schoolmate of zoe's dad- for kids with challenges- kids with autism-kids with sensory issues- kids who might make a scene at an indoor play area- and all are welcome.  there's a store with books and resources and sensory regulating toys- like weighted vests and fidgets.  there are special bikes and trikes, a climbing wall, trampolines, rope mazes to climb, spinning seats, monkey bars and an 'engine' room- a dark, calm spot with curtains made of strings of colored lights and a large bubble tube with changing lights and tactile things and bean bags- great for kids on the spectrum or people who've been smoking things. (interesting... possible insight).

anyway- my kids LOVE this place, all three of them- thus "our gym".

zoe almost always knows someone there, a kids she's done camp with, or school with, or met in an after school program.  she has an uncanny ability to remember faces and names- so i'm always surprised when no one looks familiar, and she knows their name and their parents name and where and when she met them.

today she found a girl (who i'll call lia) whom she'd last seen at the gym about a year ago.  a girl her age with autism.  zoe has become fascinated with autism.  she wants to know what it is, why a child has it, what's hard for them and how she can help.  she has asked me before if she has autism, or if it's similar to nonverbal learning disorder.  i try to reflect the question back to her- do you think it's similar?  what do you have in common with kids with autism?  what is different?  because i'm seriously curious about her take on it.  and, i don't have a lot of answers.

so this girl is there with her babysitter, a guy who's known her well for years, about 6 years.  they are about to leave- but zoe is really trying to play with her- to engage her- to get her to stop running away.  i'm busy with the boys, but keep seeing zoe chasing her around the gym- and the girl does look happy.  after a little while, i see them together on the trampoline and i go over and speak with the sitter.  i began to apologize for zoe's persistence.

no, he says.  it's great.  zoe told me that she can sense that lia wants to play. she knew that lia just needed some time and she was right.  look at them! he said.

i looked- they were smiling. zoe was calm, as was lia.  they finished jumping and ran some more- now lia following zoe.  they went into the engine room- zoe talking (of course) the whole time- asking her questions, waiting, and not bothered if lia didn't respond right away. she showed her the colored light strings and asked what color she liked best. lia didn't answer- so zoe filled in what her favorite was and they moved on. lia seemed fascinated- and she reached out and smoothed zoe's hair.  zoe led, quietly, peacefully, calmly. there was no anxiety- no nervous laughing, no forced jokes or awkward fill-in statements. zoe was absolutely relaxed- in her element- at her best.

there was very little reciprocal conversation, but there was reciprocal connection.  it was not parallel play- they were engaged- almost like children who don't speak the same language but can somehow communicate. and enjoy each other.

the sitter told me that they come every week. they usually come with a boy from lia's school to encourage socialization and communication.  he said, every week- they just ignore each other, they play separately and then go home.  he said he's never seen lia like this- that he wished he had a video camera so her parents could see her with zoe.

we turned around and they were running back to the trampoline -holding hands.

when we left- zoe asked if we could see her again soon.  so i asked her, what she like about playing with lia- why she wanted to see her and play with her again, and yet she doesn't feel that way about other kids- (other typical 11 year olds- i'm thinking).  she said she didn't know- but that she could understand her.  that they could read each others minds.  that maybe it's because she and lia have "similar problems".  i asked what she meant and she said "we both don't like loud noises and have trouble reading facial expressions."

i remembered my barbara inspired 30,000 foot goals for my kids:
      to feel they have inherent worth and value
      to feel loved and be able to give love
      to search for God's purpose for them
      to make good choices
      to know they have something to give

and i saw the whole day in a new light.  i saw hope.  i saw fruition. a saw a girl with a gift.  a girl with a purpose.

i left feeling so proud of her.  of her kindness and her ability to reach out. to love.  to make good choices. but also i left feeling really happy for her- that she felt like she had something valuable to give- and she was right.  and that she felt understood and connected with another girl her age.

but most of all, i felt happy that she had found a friend.

burn out and recovery

i had a patient last friday, who i've written about before- he has ALS- a neurodegenerative disease.  he's getting worse, he is not able to do much for himself- really anything- because he's lost the use of his limbs.  on friday, his wife looked worse than he did.  she began to cry.  and she cried for most of the visit - which was over an hour.  she became the focus- because she has massive caregiver burn-out.  she is sleep deprived and exhausted.  she spends all day and night looking at a life she didn't sign up for- watching her husband slip further away from the man she married- and more into dependance.  she can't get away from the reality of their suffering.  and as she looks at him, feeds him, bathes him; she loves him, and she's also so angry- at his illness and the complete change in her life-his life-their lives.  she is in so deep, she can't separate herself out- she is terrified of leaving him- but she also wants a break-but that makes her feel guilty- because she can leave- but he can't- he's ultimately trapped- so the swirl of negative emotions gnaws at her- weighs her down. she can't see a way out. if she looks back she desperately misses her old life, if she looks forward, she sees his worsening and death and being alone.  the biggest clue, was that she'd started getting mad at him- snapping at him- and then being consumed by the guilt of that.  it's burn out.

i get it. not as dramatically.  i'm not dealing with a husband with a terminal illness.  but i get the day in, day out overwhelm of living a life you didn't think you would find yourself living.  of watching someone you love- suffer.  of facing it- literally- all day, and that snarl of emotions that follow.  of being lost in it.

today i feel withered.  it's such a good word, because it looks and sounds like it's meaning. still alive, but in need of revival.  crumpled over, pale, and kind of pathetic.  that's me.  when you're around a depressed person, you can tell because you start to become depressed- they kind of give it to you.  zoe does this to me- she gives me her yuck inside, her frustration and overwhelm.  i'm trying to stave it off- to maintain- to not wither.  i'm trying to remember what i need to do for self-preservation.
pray.
write.
breath.
pray again.
think about the big goals- the 30,000 foot view. let go of the little ones.
smile.  even though it's forced.
laugh. even if you can't think of something funny.

yesterday zoe watched the documentary 'the wild parrots of telegraph hill'.  it's about an odd, eccentric, homeless, jobless man, who feeds and observes a flock of parrots living in san francisco.  in caring for these birds, he begins to learn about relationships and love.   and in the end of the film- his two favorite parrots die- and he ends up moving in with some friends across the bay- and then falling in love with the documentary film maker.  so the lonely, unstably housed man, finds love and housing.  it's a nice story.  well zoe couldn't get past the death of the bird.  it was back to 'where the red fern grows'- she was so angry at me for having her watch such a sad movie.  so we went through the whole routine about allowing oneself to feel sad, to cry, and that to relate to characters is a good thing to do. but she'd missed the part about the lonely guy finding love- that the birds dying was an important step in him letting go, that it enabled him to move on- to find relationship with people.  that it's way more complex.  that you can have sorrow and joy.

and i'm trying to see this as good, and another step, but it feels like the movie 'ground hog day'- the same stuff again, and again. and i'm trying to remember that for her the complexities of emotions and relationships are really hard to grasp.  and i'm trying not to compare. and i'm trying to be in the moment, and not be scared of the future.

on friday, i told the wife that she needed a break.  that even though i wasn't her physician, i could tell she had big time burn out, and i was 'ordering' it for her, and for her husband.  he's on hospice, so they can have a respite week.  a chance for him to be cared for 24/7 in a nice home-like facility.  she can be there too, but  not have to do anything- she can sleep, or they can watch funny movies, and not have to feed him and change him- because for that week- someone can relieve her.  and maybe she can find herself again.  she's so burnt out, she might not do it.  she's so afraid to change her traumatic circumstance- like the  stockholm syndrome.

i get that too.  i almost didn't go to ethiopia because i was so afraid to leave, even though i was exhausted. thank God, mike new i needed to go and supported me in it.  he even used the right language- he told me i needed to go for my friend lisa, not for me.  he used care-giver burn out language.  "do it for someone else"- because the care-giver has forgotten how to care for themselves. sometimes you need to get out- get away- not think or talk about it, in order to remember yourself again.

sometimes you can't get away- and you just have to revive without leaving, without travel, and without escape.  and so you have to think of your favorite things....and when you can't even do that.....then you sing the song from the sound of music and remember maria's favorite things:

raindrops on roses and whiskers on kittens,
bright copper kettles and warm woolen mittens,
brown paper packages tied up with strings,
these are a few of my favorite things....

and then i don't feel so bad.

brokenness

it's finally warming up.  i've been thinking more about the book 'the dirty life' that i just finished.  i've been thinking about brokenness.  about how the things that move us the most- that stir our spirits- are interwoven with strife or pain.  people being born, people dying. running a marathon. climbing a mountain.

the author's experience of tilling the land- bridling the horses-lifting the hay barrels- took much sweat and effort- it was  a challenge- in many ways it broke her. she couldn't out-smart nature. she needed to rely on other people, learn their ways, and change.  experiencing birth breaks you.  you can have the perfect plan, and then you go into labor- and you realize your ultimate lack of control- and you experience the definition of a miracle-fruition, creation.  kicking, crying, breathing life from an act of passion 10 months before.  how little you really had to do with it.  and death. how a body so strong, knowledgeable, attractive, dignified- is broken, by illness or accident or the violence of another- and then in a moment-all that life- gone. those left loving, are broken.  now aware of their limits- their endings, and of the delicacy of us all.

for a long time i was frustrated by the brokenness.  by the need of it- in finding truth, just by the pain of it.  when we were living in the unknown valley of what to expect with jude during my pregnancy, after being given a poor prognosis- i remember falling to my knees in the shower- weeping- broken.  feeling the cold porcelain tub and the smooth warm water and my body- my swollen womb- and the helplessness rained around me.  i was just an object, a piece of something- like the water, like the tub- crying out for a God who loved me to intervene.  to meet me there- in that deep deep sorrow- and gather the pieces back together. and He did.  that brokenness moved me- it showed me a bigger world, a bigger plan- and how limited the view is.

it's ongoing.  life promises us joys and sorrows- you can't just have one flavor.  right now is one of the joyous times.  a beautiful day- sunny, warmish- lots of time with family- grandparents- good food- friends.  an almost full moon and a clear evening sky.  smiling children.  melted snowman with a hat still on in the front yard.  seeing that night sky- knowing that all around the world- people are all looking at that same moon- feels whole- feels healing. yet i know that some won't notice the moon- because they're too hungry, it's too stormy, or they're crying out in a tub somewhere with a deep, deep sorrow.

but with it all- there is hope.  each day, is new, and brings newness.  new people, new ideas.  new opportunity to see God- either in a sunset or through our tears.  to feel our smallness and our unity.  to give and to remind and to push through our tough times, with each other.  knowing that we really live for the moments when our spirits move.

understanding backward

amazing.  cold and snow covered atlanta.  feels like i'm back in boston.  the kids were out of school all week- it was crazy-but fun.  yesterday i worked, and again, it was a welcome break.  when i got in early yesterday morning i found out two of my patients had died the day before.  i took comfort in knowing they died peacefully and pain free because they were up on our palliative care unit- with some amazing nurses who are so good at the caring part of their job. but there is always a little sting- even when expected- seasons of life.

last night i finished my book, 'the dirty life' by kristen kimball.  it was the book mike gave me for christmas- about farming, food and love. about a girl from NYC who meets a very different boy- on his farm- and how she leaves her life to join him.  she falls in love with him.  she falls in love with farming. with the dirt of it, the work of it.  and it seems for her- he and the earth and the produce of the earth are all one- they can't be separated. i'd complained about the book because i was hearing too much about farm logistics and not enough about love.  but the last couple of chapters pulled it all together for me. i began to understand that for her- they are all related.  she found her self- her identity- her place of peace- somewhere she never expected- somewhere she would never have purposely looked.  she stumbled into it and then she took a risk.
in the manure and the cold farm house and the 4 am waking and the calloused hands- she found purpose and meaning.  it wasn't pretty- but it was beautiful.  it was dirty- but glorious.  it was hard- but sustaining.  it took time, and work- but it gave back in abundance. she describes the constancy of it- the fight against nature trying to reclaim it's wildness.  the importance of vigilance- and the consequences of inattention. she began to value these things.  she saw both the reliability and unpredictability of nature. and to understand the importance of the heat in summer, the frosts and freezing winter, and the rains in between.  each needed, each with merit- even in their extremes.

it reminded me of many parts of my life.  of finding myself where i never dreamed i'd be.  of finding beauty in the difficult.  of process and work and the pain of it- and the glimpses of joy.  that joy often comes covered in dirty- like birthing.  it reminded me of the value of ritual- of the importance of routine- that those things (which we often complain about) ground us firmly- and we'd miss them desperately if they were gone. and of seasons.  the hard ones alternate with the gentle ones-and in the toughness, when our eyes are most wide open- we can see more.

she writes the book about her first year of farming, her first year with her fiancee, 6 years later. this is important. she has the advantage of perspective. of time settling things. of memory sculpting reality, shaving the sharp edges, smoothing the wrinkles. cultivating the lessons and mining the gems from the quarry of that first year.  time heals, but time also gives. that is why i love looking backwards, because that's when the understanding comes.  "you live it forward, but understand it backward." (cutting for stone). and reflection  helps me be more present-or more alive in the present. because my eyes are open and i see more.  there is a saying in medicine, "you see what you look for, and you look for what you know."  time and reflection-remembering- understanding- helps me to know- with out all the raw emotion that swells in the present. so i can look, so i can see.

learning to choose

after all my angst, and all my self-pity, zoe did great yesterday.

i got the full report from my friend.  she sledded with the other girls for about an hour, and then they played inside.  there was no drama.  there was no stickiness.  at the end of the time two of the girls wanted to walk to the park and sled more- my friend knew this would be too far and too much for zo- so she told her she could stay and play at the house until i came to get her.  this could have/ often would have- been a perfect melt down opportunity. but she just said she was disappointed and went to play with lily's new harry potter lego kit.

when she came home- i asked her how her afternoon was.  i'm thinking "fabulous! i played with the girls, we had fun, i didn't get upset- it was great!".  and i got, "i'm really jealous that lily has a harry potter lego kit and i don't!" in a really whinny voice as she stomped her feet.

and this is where, once again, i talk before thinking.  i said, "really?!?  that is your take home of the day?  i heard you did great! and that you had fun! and that you weren't sticky- and all you have to say is that your jealous about some legos?"

i didn't stop to think that probably- she was absolutely exhausted because of how good her afternoon was, because it takes her so much energy to follow along- to not be anxious- to not be overwhelmed- to stay with the conversation- and to manage her body on really icy hills and sidewalks when her vestibular system sends her different messages, and when it's really cold and she's wet and her sensory system is on overdrive. that for her- it's running a social marathon.  that not melting down about being left behind when the other girls went on to the park- was huge for her- and took a lot of work.

she said, "well, i didn't tell lily i was jealous, i didn't get upset, i saved it until now."

therein lies the greatness. the progress.  the growth.

because it's not about being 'cured' of her ways of thinking- it's about learning how to respond to her thoughts and emotions- about when to reign it in, and when it's safe to let it out.  it's about knowing that even if you feel upset that you can't go to the park- that your portion of the playdate is over, and you channel it into being jealous about some legos; that it would be weird to say that out loud.  and she got that- she did it.

i was so proud of her.  i said "high five for that good choice!" she said "no, i'm not doing well right now".  i told her what a big deal it was that she is not victimized by her sticky thoughts.  that she is learning to choose how manage her feelings- when to share them, when not to- that home is safe- she can go to that place of letting it out with us- that we get her.

it still trips me up that she doesn't know how to take a compliment- that she minimizes her successes. and that she doesn't seem to feel the joy she should feel when she triumphs socially. it could be a sign of her oblivion. that she just doesn't really care that much.  that maybe she really does care more about legos than relationships.  but i don't think so.  i think it's because she's a perfectionist- in all ways.  and she knows even though she didn't get sticky or upset-it probably doesn't classify as social triumph. she knows she's different and she didn't feel connected with those girls.  or maybe she did, but she was disappointed in not going to the park with them and it was channeled into jealousy.  i don't know.

what i do know is that peace doesn't come from no sticky thoughts.  peace doesn't come from no meltdowns in public- although i often fool myself into thinking that.  peace comes from being OK with what happens- whatever it is. peace comes from the stillness. and just as she is learning to make choices about how to manage her behavior, i'm learning to make choices about being still.

today my celtic book of prayer reading was:  "Stillness must begin in the heart.  It is a decision, an active choice, to become still, to still your soul. Sometimes, it is as if there is a bunch of monkeys in the tree-which-is-your-mind; and you will not still them by shouting.  If you speak quietly and gently- peace will result."

my mind often feels full of monkeys. and i'm not great at speaking quietly nor gently.  i need to move into actively choosing stillness. practicing it.  and ironically- zoe will be my inspiration.  

le bien, le mal

the good, the bad.  i'm trying.  i'm trying not to feel sorry for myself. trying to look on the bright side. so much of life is just how we break it down, how we paint it, half full, half empty.  i'm looking at zoe and the world around her- zoe and other 11 year olds.  which is almost always a big mistake.

this part is so hard for me, maybe only for me- hopefully only for me.  it's hard that she is never invited- never asked, that she's no ones number one.  that i need to instigate, plan, invite or organize.  that other girls call each other, meet each other and go for ice cream or bagels or gum.  that they have sleepovers.  that they are expanding there horizons- becoming independent- formulating themselves apart from their parents- creating their worlds together- as peers- as friends- with unity and commonality.  that they go to 'friday night skate' and begin the drama of boy meets girl.

and there's my girl- alone.  sometimes they stop by- which is good, and kind and nice and she loves.  but it's painful too.  the difference. the sideways looks between them.  the obvious difference in how they talk to her.  and her over-talking, nervous, trying, awkward, not following.  you know these kids from your own childhood- they didn't fit in- you didn't really want to be around them- because it was awkward for you too- you didn't invite them over- you were nice and polite but you were not friends.  or maybe you weren't even nice- maybe you were mean. or maybe you were one of those kids- who just didn't get it-ever, and you know how much it sucked.

i should be over it by now.  it's not new.  this is how it's always been. somehow i'm just not over it.  somehow it's actually harder now.

yesterday i was on a walk with one of my best friends.  we were talking about uganda and zoe and schooling.  i was saying our plan was to continue homeschooling her for a while- that i wasn't sure if we'd put her back in school- but that i get stressed sometimes about her future- about whether she'd want to go to college and how that would happen.  she said she wouldn't worry about that because zoe's path was so obviously going to be different- that she wasn't going to just go off to college and find a boy and get married- like i did. ouch.  that stung.  maybe it stung because maybe inside i know it's true.  maybe it stung because i had to hear it out loud from someone else- a voice of my fears.  or because it was taking away some far off hope.  but mostly it stung because true as it may be- it's just not something you can state.  as if it's a 'known', as if it doesn't deserve an acknowledgement of the fact that it totally sucks. and it's  really, really hard, and isolating, and unknown.  it stung because she has no idea how much it stings everyday- and every year- and that while her life goes on and follows it typical course- mine doesn't.  and i try hard to not feel sorry - i try hard not to wish it were different here- i try hard not to feel jealous and resentful. but sometimes i do.  and then of course i feel terribly guilty.


right now zoe is over at lily's house.  i invited her over, i called, i dropped her there. she is waiting for lily to come back with her friends from the bagel store.  she'll get to play with them. i won't have to watch. but i do have to wait- by the phone for 'the call' that things aren't going well- or hear afterward about the stickiness- about her reaction to the stress of being around kids who are 11 and who get it. or maybe it will go well- or well enough.

the peace
where is it?  i'm not sure.  it comes sometimes.  when i can remember that it is what it is.  when i can embrace her as just zoe, not zoe in relation to everyone else.  when i can 'forgive' those around me for their normal lives.  when i can not stress about how she's doing down the street with three other girls her age.  when i can let it go and when i can be OK with her not fitting in exactly.  i'm not sure if the work is in accepting things, or lowering the expectations- or if the work is in being still in the awareness that it will always be hard.  that peace and joy come in many flavors. as does love.  that lives that are lived out differently are still beautiful and meaningful and passionate.  that hope isn't hope for her to live the 'normal' path- but to blossom on her own path.  that i will hurt her by feeling sorry, and i will grow strength in her by helping her carve her own, unique way. ahh, there's the peace.

finding the joy

quiet and icy and cold. today bryn turns 4.  my beautiful little boy.  my beautiful little un-timed but desperately wanted surprise- an answer to prayer as they all were.  i've been thinking about lots of things.  about people being born and people dying.   i've been thinking about being overwhelmed and how i respond to that. about how i treat people when i'm stressed.  and about how when you become a 'missionary' it's like having that fish symbol on your car- or walking around wearing a WWJD tee-shirt.  you'd better not cut someone off while driving, or not give the guy on the street a dollar.  there is something about its external nature, that holds you to be more accountable- that helps you be mindful of the way one should behave.  yesterday was a day of lessons learned. lessons that i really needed.

mr. A died yesterday.  i got a message at 6 am from his wonderful daughter.  we'd talked the day before- so i knew it would be soon.  he had started hemorrhaging at home - blood everywhere- from both ends and so she called 911.  he's on home hospice- but it's hard to not call for emergency help when you're dealing with that.  he was pretty much unresponsive- but not on any machines- per his wishes- and in the ICU.  she called to let me know. she called to ask what to do. what if his heart stops she said?  what if there is something we can do to stop the bleeding? "i know he can still hear me- because when i talk his heart rate goes up" she said.  i was so thankful she called.  i explained that at this point he was trying to go- his body was shutting down.  we were chasing failing organs- trying to fill a bucket with an unrepairable hole.  i reminded her of what we both knew- that he wanted us to let him go when his time came- that he didn't want his life prolonged on medicines and machines when he was dying.  i reminded her of the unbelievable care she'd given her dad- of what an example she had been to me and our clinic of love and commitment to family.  i told her her dad can still hear her, and sense her, and that she should go be with him- tell him everything she wants him to hear now- because he is dying- because we need to let him.  he died 14 hours later.

i've been thinking about the importance of honesty and ownership as physicians.  when i say ownership- i really mean leadership.  we do this with the medications we give- and the tests we order- we feel a sense of responsibility to make sure our patients take them, do them, and follow up with us- we are prescriptive with our prescriptions.  we write "orders" in the chart.  but when it comes to people dying- we often begin to cower.  we begin to realize our ultimate powerlessness.  and so we start offering things we know won't work- or won't work for long.  we do things, because we're  doing something. but this is not how we practice medicine with people who aren't dying.  we would never suggest an intervention- or a treatment or a medicine that we know would really not help.  but at the end of life- we begin to grapple at straws- we operate out of our own insecurities.  what if i'm wrong- what if he does pull through- what if he gets another 2 days?  we avoid.  we shuffle.  and in doing this we abandon.  and we push the responsibility onto the family.  i needed to tell her- even on the phone from a hour away- even though i hadn't seen him in 3 weeks, that he is dying.  that we need to let him go.  she needed that permission, she needed it from his doctor.

then the day began with the kids.  a snow day.  everyone home, everyone with energy, and mike and i with a giant todo list.  and after some squabbles and people picking at each other- mike and i went to have our time of regrouping- our time of prayer.  we realized we were stressed and not responding well.  we were feeling overwhelmed and not joyful.  our move to uganda- is actually really hard work.  we're getting ready to sell the house (2 weeks to go), we need to raise our own funds for the next three years, we need to prepare for what we'll be doing over there, we need to help our kids prepare, and we need to do all the same stuff we were doing before- like our jobs, and our laundry, and teach zoe and raise the boys- oh, and have some fun and see our friends once in a while.

and this is where the importance of ritual comes in- the importance of patterns and routines that give stability- when everything else is out of whack.  so following the celtic book of prayer has become our morning routine.  it grounds us- reminds us- puts us back together.  and yesterday, we really needed it- to be realigned.  and we realized that our todo list was rapidly eating our joy.  that the seriousness of it all was stealing our sense of humor.  that we had become the focus of what we're doing- not the missional work- not the call to serve. that we were operating out of fear and not faith, and that if felt bad, and that it was wrong.  we remembered why we love uganda and the ugandan people.  they have joy and laughter and smiles- in way more challenging situations than we're facing.  we remembered that we are only asked to take what we have and give it- not worry about coming up with more. we remembered Gods promise of provision. we remembered how blessed we are, and we smiled, got the kids together and went out and played in the snow with friends.

then came the part about being a missionary.  it was 4:40 in the afternoon, getting colder and about to get dark.  a man called me who i've never met, but who i'd spoken with the day before to ask if he could paint our kitchen (before we sell the house).  he called because he needed money- so he could get his medicine and a pay for a place to sleep.  he was hoping i could give him money today and he'd paint for me later this week. he was several miles away- the roads were all ice- many closed because of the snow stormed we'd had.  i thought about how easy it would be to say no. i've never even met him- and i never have any cash at home - how is he even going to get over here to get the money?
then i imagined him coming over to paint the next week- after someone else had helped him- or maybe after he'd ridden public transit all night to say warm.  i imagined telling him that i'm about to move to uganda as a missionary. and then i heard the words of Jesus- that i've read so many times.

feed my sheep.
i was hungry and you gave me food.
i was cold and you gave me shelter.
i was naked and you clothed me.

and i thought about how blessed we are- how warm we are- how we'd gone to the market and had food. i thought about injustice and homelessness as a reality, not a research topic.  i thought about the value of one human life.  i thought about WWJD (what would Jesus do).  and that answer was easy- it became a matter of how much should i do, not what should i do.

and i remembered the $100 dollar bill that was still in the purse i'd used in ethiopia- the $100 dollar bill that a man had given to me on the airplane- when i told him i was becoming a missionary in uganda.  that gift had had a huge impact on me.  a big gift from a man i'd never met- a man i'd never see again.  a man who'd felt a need to give- and responded.  that $100 dollar bill was a symbol- a promise of God's provision.

now, here before me was a man i'd never met- a man with a huge need- a man who needed to feel God's provision- and i was the one being asked to provide that.  so i responded.  i warmed some chicken and got some fruit and drinks together and packed him a dinner.  i got the $100 dollar bill  and asked mike to drive out and get him, to give him the food, the money, and take him to get his medicine and take him to a hotel- or a friends house. and mike did.  the man got what he needed and slept at a friends house.

when mike came home we sat down to dinner and talked about our day.  about what we'd learned about joy and peace and poverty and injustice and following Jesus.  we talked about provision. about how this man had actually given us a gift.  he'd helped us to step back and remember our mission, to look up, to get the focus off ourselves- to live as we should, as we are called to live, to live that now.  and in this day of lessons, we found our joy.

looking up

yesterday i had coffee with zoe's math tutor.  but this woman is so much more than zoe's math tutor.  she is a teacher of life and a friend.  she is a neighbor, even though i don't live near her.  she has perspective and wisdom and she focuses on the big picture.  yesterday, she reminded me of that.  she gave me permission to do that in teaching zoe.  to let go of the little rules, the check marks, and to look up at the sky.

she has known zoe for three years.  she knows how she learns.  what her buttons are.  what upsets her and what drives her. and she knows me.  that i am not a trained grade school educator, not a special education teacher, and that i'm way out of my league in the realm of teaching zoe.  but, she's also a big fan.  an encourager of this attempt at helping zoe by homeschooling.  and i think yesterday, she wanted to remind me of that.  to support this crazy notion that: stopping work (well, almost) and spending hours muddling around in the darkness to try to understand my daughter and how she learns and then teach her, is actually a good idea.

and then she gave me an assignment.  she told me to write down what my goals are for my children.  as a unit.  what is it that i want my children to understand in life, do in life- to be in life.  not by gender, or even by personality or by apparent skill or difference- but just as people.  then she said, when you are stuck with zoe, on math, or writing or anything else, go to your list of goals and see if what you're upset about, what she's stuck on, is related to those goals, and if it's not- let it go.  the 30,000 foot view.

i want my children to know that they are loved by God and because of that, they have inherent value and worth.  i want them to know and give love to others.  i want them to know God and to search for his/her purpose for them in life. i want them to make good choices.  choices that will keep them alive and healthy for a long time. choices that won't bind them.  that when sorrow comes their way they will choose faith, and grow; not anger and retreat.  that they will find deep joy and not just search for the next thing to make them happy.  i want them to know that no matter what they choose to do with their lives, no matter how much them mess up, they are loved- there is redemption-beauty can be born out of pain-they have something to give.

most of what we're "studying" isn't directly related to these goals.  but how we study it is.  the environment that i create or encourage affects her sense of value and worth. it contributes to her feeling loved or not, it models this love, or doesn't.  how i approach the day, the learning, the joy or the stress of it, is more important than the work itself.  this is true for all the kids- the boys who go to school too. it's how i make breakfast and how i ask them to get dressed. it's how much i laugh and how much i smile and how much i don't yell.

the problem is that sometimes the overwhelm of the learning, of the schedule, of what we didn't get accomplished, gets right in the way of living and teaching the real goals. it brings on the yelling and takes away from the laughing.  so her advice was so needed- but more- it was so freeing.  take off the self imposed pressure - and align with the right goals- find your days in the big picture.  look up. see the night sky and the moving clouds and let go.  she told me to follow zoe's lead more- peel away the little agenda and replace it with the big agenda.  un-school more.  sometimes you need someone else to give you permission to move in the direction you think you should but fear might be wrong.

so barbara, i thank you. again. of course it's easier to write this out, then it is to do it.  but- bit by bit- and it starts by remembering to look up.

zoe's shine

zoe has had a good week.  much better than mine. she's been more mature in many ways- and more insightful- than i have.  and i'm impressed.  she's managed to remind me, and mike, that we need to be more patient, to remember that some things are really hard for her.

last night mike was supervising her washing her hair.  he was understandably annoyed that she wasn't doing an affective job after so many years of teaching her.  she gently told him that its actually hard for her to remember the steps, the order of them, and then to get her body to do it.
we take so much for granted. we for whom this comes naturally.

today i had yet another star parenting moment.  i was getting irritated with her slow pace with eating breakfast, and getting ready.  so i said, "can't you try to act like an eleven year old? it's simple- get dressed, eat your breakfast, brush your teeth, get your shoes on, get your coat on! "  zoe's response, "mom- i'm sorry.  i'm trying.  it's harder for me to keep track of everything because of my nonverbal learning disability!" oh.  right. "i'm sorry zoe." i'm an idiot.

but the most impressive thing was how she read her brothers mood last night, and directly addressed it. in fact, she addressed the large stomping elephant in the room- that i couldn't name- the same elephant that has been bothering me all week.

her little brothers are almost 4 and almost 6 and they are wonderful- but they drive her crazy sometimes.  last night they were more hyper than usual, especially jude.  he was really acting out and bothering everyone.  i was not responding well.  i was just reacting to him.  getting mad.  giving time outs and taking away dessert.

then zoe stands between us and says, "mom- you know what's going on here? jude is really stressed about moving to uganda and having to make new friends- that's why he's acting like this- i can sense it. it's OK Jude- i feel that way too."  it was so perfect, so insightful, so mature and aware, and what made it even better, and definitely humbling, was that i had missed it.  i have been so caught up in getting mad at everyone's grumpiness, everyone's inability to meet my expectations- that i had forgotten to step back and think about what is really going on- for all of us.  and zoe- the one with challenges picking up on social cues, the one who has a hard time with understanding facial expression and tone of voice and subtlety, she senses it, she names it.

jude told her that he's not stressed about moving to uganda and that only yoda can sense things like that.  now that zoe had set me on the right track- i picked him up and suggested that maybe he was anxious about the fact that the house is going for sale this month and we're starting to pack up our things.   yes- he said- he loves our house- he doesn't want to move- and what were we going to do with all our stuff?  it opened the door for many question to come out and be answered, for people to not feel alone with the changes that are happening. and it clued me into the root of my own underlying irritation and anxiety.  we have a lot going on.  no wonder!

i love that it was zoe who sensed it.  zoe who called it.  zoe who interpreted the mood of the house correctly and zoe who spoke it.  it's her gift- the cool part is, her ability to articulate it now.

then the icing on the cake happened at the orthodontist today. zoe was a little anxious because she was getting her bottom braces on. this woman was checking out while we were checking in. then we sat down and she left.  a minute later, she comes back in and says, " are you zoe?", "yes", "you probably don't remember me, but a few months ago i was here about to get my braces and i was so nervous and you told me all about it, and reassured me that it wasn't that bad and told me how you handle feeling nervous about it all.  you gave me so much comfort and i wanted to come back and thank you."
again, zoe shines.

patience

oh dear.
i'm filled with love and overwhelm and everything in between.  the house goes on the market in less than 3 weeks, i need to get our new uganda website up and running, i'm trying to plan a fifth-grade-ish curriculum, and i have to prepare to give a talk for work next week.  so what did i do today? i reclaimed a massage gift that was given to me last year. and it was fantastic.  i have to say- i highly recommend Mark from Therapeutic Touch in cobb county.  (and for me to say that is a lot- because i never go outside of the city if i can help it).  i sat in that dim lit room filled with anatomic muscle posters and dream catchers and driftwood, listening to some american indian new agey music and totally relaxed.  i allowed myself to be completely self indulgent.  that means i allowed my mind to drift far and away.  i made no todo lists, i thought nothing about the kids, or work, or the house, or even uganda.  i just stayed with whatever floated in to my mind- music, words, poems, books, images. it was lovely.  and while that was going on- my body was letting go too. except for my left side.

my left side always holds onto everything.  my left side holds a grudge.  it can't just let things go. it wiggles and squirms and the muscles tighten and if it could speak for itself it would say something like, "keep out- don't bother, just stick to the right side." i always assumed this was linked to my psychology.  knowing that brain hemispheres usually correlate with the contralateral side of the body- i figured this meant i was left brain dominant- right brain weak.  i dragged jung into it and assumed i was too animus dominated- too male driven in my subconscious - that my wiggly left side- reflected how out of touch i really am with my sensitive feminine parts.  i feel uncomfortable, for it. embarrassed and apologetic for it.  i usually tell the person doing the massage- beware- my left side has an attitude, it's the problem child, it's not you, it's me.  but today- my left side lost.  and it was because of patience.

after about an  hour- and much leftsided squirming- he found a spot where the muscle must insert around the ischial spine (mid-butt in non-doctor speak) and he just pushed on it.  for seriously, almost 10 minutes.  i know this because after about 6 minutes-  i became aware that it was kind of weird that he was still only pushing on this one spot and began to come out of my adrift mind and begin counting. the point is that - his patience paid off. after 10 minutes- the muscles on the left side gave up. the entire side all the way up to the left neck- surrendered.

so my mind left whatever beach it was sitting on- and began to think about patience.  the importance of it.  the rewards that come with it. and how hard it is.  all i could think was- how did he know to stay in that one spot for 10 minutes?- i would never have been able to do that. i'm too antsy. maybe he's really good at listening.  maybe he knew that until that if he gave up before then he would have lost.  i don't know- but i began to realize the value in waiting.

so after 2 hours- i left, realigned, really for the first time ever. the right and left sides in balance.  not ashamed for the parts of me that won't cooperate, the parts that resist, that refuse to be flexible.  now, hemispherically adjusted. and that made me happy.

maybe it will translate into good psychology, good jungian theory evolution. or maybe my muscle memory will quickly jump right back to normal- and my lopsided self will continue. who knows.  but i did learn something about being patient.  and that is vital to my days.

I said to my soul, be still, and wait without hope
For hope would be hope for the wrong thing; wait without love,
For love would be love of the wrong thing; there is yet faith
But the faith and the love and the hope are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
Whisper of running streams, and winter lightning.
The wild thyme unseen and the wild strawberry,
The laughter in the garden, echoed ecstasy
Not lost, but requiring, pointing to the agony
Of death and birth.

T.S. Eliot East Coker

i've quoted this before- it speaks to me because my challenge is always with being still, with waiting, with how i wait.  and with learning patience. perhaps my body will help inform my mind.
I

smile

i'm waiting for the bug guy to come. i've been given the slot between 2-4pm. this sums up how i feel about my life today.  waiting for other people. waiting for brownies to bake.  waiting for the mail to come.  accomplishing mundane tasks.  today life feels like buying socks.  spending money on things you don't care about- but need. it's also the day before the boys go back to school.  it's the big version of what we called growing up, "the sunday afternoon feeling".  that mildly depressing feeling that grows over the afternoon and evening when you know the weekend is over and work and school are about to start up again. and they are acting like it- that totally obnoxious behavior that is probably a subconscious way to help avoid the challenge of returning to real life after vacation.  tomorrow they can say 'school is way better than being around mom who yelled at me all day'.  and yes- i have been yelling, and not laughing.  doohhh. it's only january 4th! the worst part is, i'm not even trying.  but i will try to change the trying part.

to add to the crazy i've had 2 other kids over and bryn has stopped napping.  so i sent jude and his friend to the friends house down the street - so now it's just lily and zoe and bryn- playing the wii.  and while this brings some quiet to the house, i can now hear much of the conversation between zoe and lily- which makes me crazy in  a different way. in a sort of sad way.

when i have zoe alone, or with her brothers, she is just zoe- in all her glory and all her challenge- but she is zoe out of context.  zoe timeless and ageless.  when she is with lily, she has bookends.  there is comparison.  and all the progress i reported yesterday is buried beneath the glaring difference between her and her neuro-typical friend.  i see what it would be like to have a typical 11 year old- who make their own pot stickers for lunch, and can go down the street to buy something you forgot at the market, who can explain the rules of a new game, who doesn't hit someone when she loses the game, who doesn't sit and talk to her little toy dog over and over again.  who has a mature conversations with adults.

but the hardest part is not hearing them laugh and tell secrets and make memories together- not sharing in the joy that i had growing up with lily's mom.

i have a vivid imagination and an excellent ability to recall old memories and live in them for a while.   this of course gets in the way of being present.  of living in the now.  of laughing with your kids. and this escapism steps in when what's around me seems painful, or consuming, or overwhelming.  so today part of me was in florence italy sitting on the steps of an old church focusing only the fountain in the courtyard that i'm trying to draw; then paris, walking on a bridge and looking out over the river- not doing anything, then addis ababa having a uninterrupted cup of coffee and a pastry, reading my favorite book beside the pool.

ok- i'm back.  to go and try.

there is an old man in our neighborhood, john.  almost every day he walks slowly up and down the street for exercise and whenever we see him coming we go out and talk with him.  he told us a story once about when he was in the hospital last year.  he'd hurt his back, maybe broken something, and it was taking a while for him to recover.  he decided that the best thing he could do to help himself get better was to laugh.  so every morning for  a week, when he thought no one was looking or listening, he'd sit on the edge of his bed and laugh out loud for about 5 minutes.  in the beginning he'd have to force himself to think of something funny- but then it would get easier and easier.  over that week he began to get better- to move more, to get out of bed, to have less pain, to feel better.  the doctors kept commenting on how he'd had this amazing turn in his recovery- he says he just chuckled to himself- knowing the secret was enlivening his joy- finding the humor- choosing to smile.

and now i'm smiling again.

begin again

beginning is the hardest part.  it's hard because of inertia.  force is needed to overcome the lack of motion, of inactivity . but i think it's hard because it's also when we have the most optimism and energy- so we're fooled into thinking we should be successful- or it should be easy.  but it's usually not.  beginning a book- getting into it, knowing the characters, the place, caring about them- it takes time.  beginning a conversation- maybe that's why people talk about the weather- universal context- finding common ground.

today was the beginning of the second semester of homeschooling.  it was also a preview of homeschooling all three kids- at very different ages and stages- which may be in the future in uganda.  it was a good idea to let go of all expectations- OK most expectations.  so i had a pretty good day- meaning no one suffered irreconcilable damages to body or spirit- and people learned things- or at least practiced what they already knew.

beginnings of new days are always good for me- in fact it's my best time- because i am a morning person.  i get up with this absurd idea that i can do pretty much anything. i get up with energy and enthusiasm- in great need of coffee, but ready for the world to bring it.  but all that optimism and positivity must fill the tank around 5 am- because if i'm awakened between the hours of 1am and 4am- it is absolutely the opposite.

and that is what happened last night.  i was half asleep- dream/thinking about being in uganda.  it was very dark and quiet outside and very dark and quiet inside of me.  i was imaging being in the little market in mukono- the one i'll be able to walk to, down a long red dirt hill and across a very busy street.  i was imaging the rows of not-so-fresh bakery items, beside the cans of red jelly, variations of box milk, electric pink hotdogs, playing cards with the actors from the titanic, old dusty pens and notebooks.  i was remembering what wasn't there- cheese, brownie mixes- chocolate chips- good bread-vegetables out of season - grown in other places, almond milk.  i was remembering that it wasn't particularly pretty- it wasn't a place to go because you wanted to get out of the house- and the kids can ride in a cart shaped like a race car and maybe they'll have free samples. it's where you go because you need some pineapples or bananas or maybe a deck of cards with leonardo and kate on them.  i imagined bryn who is almost 4 and has never left the country- having a full on meltdown in the 2nd of 4 isles in the little market- and people looking at the spoiled little blond kid- who is being told he can't have the $7.00 box of stale captain crunch- while he screams that he just wants to go home to america. and i was filled with dread and anxiety.  the full on 'what are we thinking?' feeling.  and this sense of deep apprehension followed me for the rest of the night.

this is holding the tension of the opposites again.  this is straddling the gap between faith and fear.  longing to go where it feels right and terrified of the going.  knowing that mike and i are the ones who feel called into this- and aware that we are deciding this for three dependent little people.  it changes your sense of responsibility.  it begs the question of - are you sure? now? there?

thank God for the sunrise- that pink and yellow growing hope poking its head above the scrappy tree- lined horizon-calling me out of fear and back to faith.  showing me the world again here- blemishes and beauty- reminding me that it's not where, it's who.  and that our spirits are so much deeper than our senses. that it will be OK- for them- for me-for us.  reminding me to trust.  and so the day began once again, in eager anticipation.

it ended at brain balance- zoe's last week- and me doing a video testimonial to our experience- in reflection over the past 6 months.  of course, i didn't prepare- i winged it.  and in those 10 minutes i was again reminded of how far she's come- as i heard myself say what she now does, and doesn't do, what she now has insight into, what she now reflects on.  but i also heard myself talk about the beginning- and my doubt- and her slow start- and how things got worse before they got better.

and i remembered how hard beginnings are- and i remembered my 3am mukono market vision- and how hard it probably will be- but that time will pass- the sun will rise- the sky brighten- my hope will be full again.  time, it heals.

as it turns out, ode to my beautiful mom

we spend lifetimes finding ourselves- only to lose ourselves and begin again.
a beautiful sunday.  being in church always resets me- refocuses me- enables me to let go of the week just finished and start again.  it makes me feel small, but loved; forgiven yet worthy; helplessly empowered and full of dependent promise.  i can sing and feel the music and pray and feel my heart- and be reminded of the simplicity of it- let go of complication.

last sunday we were in north carolina, snowed in at the mountain house.  after the kids had gone to bed- we had an evening prayer service led by mikes dad- who is a retired philosophy professor and now ordained in the anglican church of uganda.  after the readings and liturgy and prayers, my sister suggested that since the family was all together - they should pray over mike and me- and our preparation and mission to uganda.  immediately i got a lump in my throat.  i knew this is exactly what we needed. this was a moment so special and so rare. two families together- his and mine- united by a faith in God that ran through generations and has landed us together, as who we are separately, about to uproot and embark.  and so it began, and i wept through the whole prayer.

it began with my mom- a voice i've listened to for 40 years- a voice who has called out to God on my behalf so many times- more times than i'm sure i even know.  a voice of steady conviction- a voice whose faith is deeply planted and does not  waiver- does not question- is not afraid or insecure. it is the voice that raised me.  the voice who spoke the first words my earthly ears ever heard, " Jesus loves you, even more than i do!' they spoke on that cold night in cambridge massachusetts 40 years and two weeks ago. her voice brings to me instant comfort- and i knew as the tears poured down my cheeks that it's that voice that i will miss so much when i live across the world from it. it's that voice that i worried would leave me mommy-less when i was 10 and she had breast cancer. that voice that warned me of life's temptations and spoke of its joys and of my purpose and plan in the universe.  it's the voice that led me to seek God despite the crap life throws you, to find meaning in the suffering, to not be short sighted, to give and give and give again- because we are replenished. it's the voice that my children hear at least weekly now.  the voice that shapes them as it shaped me.  a voice that i will be eternally thankful for and will hear in the deep parts of my heart always. even on the other side of the world.

and the prayer continued with my father. then my brother, then mikes mom, my sister, my brother in law, and mikes dad.  and i could and i should write a paragraph about each of them- their unique part in our lives- in my life- in my formation and process.

and we were sitting on the floor of the living room- surrounded by love and people who share in the even deeper love of God.  people who trust in that love enough to freely let us go- to send us even, because they gave up control when we were little babes.  so i cried and cried some more.  my heart moved and loved, and saddened and impassioned and inspired and rejoicing at the blessing of our family.  and the knowing that while far apart- we remain connected.
and that really, it is just the blink of an eye.